Book by late Fremont man offers inspiration

FREMONT -- Diagnosed with a degenerative muscle disease when he was only 10, Phillip Bennett found inspiration where others might have met only frustration.

The disease, Friedreich's ataxia, eventually robbed Bennett of his ability to walk, to speak and to care for himself. But he compensated by figuring out how to water-ski, becoming a shot-putter and graduating from college -- all with a joyful abandon that continues to inspire those he left behind when he died at age 27.

"There were a couple of times he wasn't sure if he wanted to live, but he ultimately decided that he was going to not only live, but live to the maximum and make every second count," said Jaime Richards, Bennett's former teacher and a writer who helped complete his 191-page book, "Living the Decision: A Pocket Guide to Cramming 72 Years into 27."

Phillip Bennett, a Fremont man who died in 2011 of a degenerative muscle disease, goes sky-diving with a friend. (Photo courtesy of Valerie Bennett)
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Laura Oda
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Bennett, of Fremont, died in February 2011, too soon to see the book's publication in December 2012.

Valerie Bennett said her son found inspiration from a piece of dialogue in "Lord of the Rings," the famed fantasy trilogy. "It's when Gandalf tells Frodo, 'All you have to decide is what to do with the time that is given to you,'" she said. "Phillip's book is about how he lived with the time that was given him."

Bennett was an eighth-grader when Richards, then teaching U.S. history at Hopkins Junior High, met him in the late 1990s. By then, Bennett had started using a wheelchair to traverse long distances, and by the time he was 16, he needed it full time.

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His parents, heartbroken by his diagnosis, enlisted the help of medical specialists and other patients' families in search of a cure. At the same time, their son embarked on a series of thrill-seeking adventures.

He started small with amusement park rides, and then left his wheelchair to rappel down mountainsides in Mt. Diablo State Park, equipped with little more than a rope and harness. At Moaning Cavern Adventure Park outside Angels Camp, he descended 180 feet in darkness.

Even as his motor skills declined, Bennett took up snow skiing, river rafting and spelunking. He relied on special equipment -- a chair and modified skis helped him water-ski -- that was provided by the nonprofit group Disabled Sports USA.

He even persuaded friends to join him sky diving, said Felice Barash, a longtime friend and former classmate who lives in San Diego.

"I said, 'Sure, Phil, I'll jump out of a plane with you,'" she said, laughing. "I was scared and freaked out, but he was pure excitement. He had no fear."

Barash and Bennett grew up in the Mission Ranch neighborhood and attended Mission San Jose High with a circle of friends that included Dane Lentz and Giancarlo Moats, buddies who pushed Bennett to school in his wheelchair and, when his class went on a party cruise on San Francisco Bay, carried him on deck.

They encouraged Bennett to join the high school track-and-field team and to compete with them in discus and shot put. Bennett had high expectations and got frustrated when he couldn't meet them. In time, friends said, he learned that as long as he competed, he might find it fulfilling. Lifting the shot from his wheelchair, he twice finished third in shot put competitions -- once when there were three competitors and another time when an athlete fouled out because his foot was over the line.

"It was even in the paper: '3rd, Bennett, MSJ'" Bennett wrote in his memoir. "I just sat there, taking it all in, unable to mask my smile."

Barash said Bennett's zest for life was unwavering, whether he was flying to New York City to watch the ball drop in Times Square on New Year's Eve or inviting her to join him on another fate-tempting adventure. "He was always plotting to do something interesting and crazy next, things he wanted to accomplish right here and now," she said.

Bennett was not immune to moments of despair. During high school, dressing himself became a struggle, and when he reached his early 20s, his mother had to start feeding him.

"We had to go through the five stages of grieving over and over each time he lost one of his motor skills," Valerie Bennett said. "We adjusted to a new reality when he could no longer feed or dress himself."

In 2008, he earned a bachelor's degree in journalism from San Jose State, where professors encouraged him to write. By then, his ability to speak and hear had severely deteriorated. His hands curled up and clenched, and in his final months, he could type only by using a special computer program that responded when he dragged a finger over the keyboard, Valerie Bennett said.

"That was so hard to watch because he had so much to say and it became so hard for him to say it," she said.

He was about 65 percent finished with his memoir when he ran out of time. Richards and his mother finished the story, pulling together his chapters along with memories from family and friends.

The book was self-published in December. Proceeds are going to the Friedreich's Ataxia Research Alliance, a nonprofit aiming to find a cure, and to the Phillip Bennett Translational Research Award, a six-figure grant awarded each year to a medical researcher.

The book ends with an afterword subtitled "Five lessons Phil would want you to learn." It's the fifth and final lesson that might best capture the spirit that filled his short life.

"All of our lives are finite. Stop living like you have forever," Bennett wrote. "Plan for the future, but don't forget to sometimes live like you don't have one."